Author: Erika

I Just wanted to let all of you know how appreciative Erika and I are for your unbelievable support and prayers. Peter is doing a GREAT job. He is handling his situation in a way that would make any parent proud! When the Doctors or nurses come in to check on him, his answer to their many questions is ALWAYS “Good” He has maintained his personality throughout and has won over an entirely new set of nurses. Today he told me he needed a Kleenex, because his nose was running. You see, he does not like to blow his nose real hard because it makes him cough, and coughing hurts his throat. Anyway, he used the Kleenex and I said “you must have a leak in your nose, and he quickly responded, “yeah, I must have a hole in my nose Dad.” Earlier in the day a nurse who is in training met Peter for the first time, and as she watched him in all his glory on the toilet, she said “I just want to take a bite out of him he is so darn cute.” He continues to amaze Erika and I and we continue gain strength from him. So please keep him in your prayers and keep posting on his site he really enjoys us reading them to him.

Thanks and God Bless,

Ty and Erika

Let’s see – where to begin? It’s definitely an oxymoron to say that BMT Day was uneventful, but it was rather low-key (medically speaking) as we had hoped. The staff helped make it special, the clergy came in and had a prayer service & blessing, and it was something we’ll never forget, but we did breathe a huge sigh of relief when the day was done! Despite a pretty potent combination of drugs, Peter stayed awake through both parts of the transplant, had no reaction to the cells going in and didn’t crash until almost 8pm. Vomiting continued and he was up early yesterday morning, off and on, and then went off to sleep for over 3 hours mid-day. He awoke clearly feeling different and having some pain. He started vomiting blood later in the afternoon and this continues today. This was the first real indication of sores in his esophagus. Although he was uncomfortable, he & I played a little board game of baseball last night while watching the Twins on TV, and he still managed to tell me who was at the plate, who scored, they were playing the Yankees at Yankee Stadium, and so on.
Peter continues to say “good” every time the doctors and nurses ask him how he’s doing…amazing. He does not complain so we’ve become pretty good at recognizing when he’s having pain. Today it’s just plain obvious – his cheeks are a little swollen, he’ll barely open his mouth, no smiles, headaches, vomiting, and lots of sleep. The continuous drip of narcotics will begin shortly and the length of time he needs these is yet to be determined. Daily transfusions began today – his platelets were 7k this morning and hemoglobin is in the 8’s. No fevers yet. They aren’t even checking his WBC and ANC for awhile now, as they know those are at 0 (thus the inability to fight off infection). The doctors still feel he is doing great for all he is going through, but warn us it will get worse before it gets better. Thanks for all of your messages and support. We’re so happy to be into the “positive numbers” now!!!
Ps. Please keep all the kids with cancer in your prayers! We have gotten to know many wonderful families here, and they are all battling hard against this disease.

The phone number we had on the previous post was incorrect. It is (612) 273-0227. We’re in Room 4-210 on Unit 4A.

The journey is underway! Peter started chemo late Monday night and 2 of the drugs run in continuously over 4 days, the third drug is infused over an hour on 3 of the days. So he’ll finish the chemo around 1am Saturday morning. So far he is doing great just like a normal kid. The mood is different here on 4A. It’s much more quiet and you just get a sense that there are rules here. Leave coats outside the door, no feathers of any kind in rooms (ie: pillows), a lot of shoes sit outside doors, there’s soap outside every door, and speaking of doors – they are all closed! If your door remains open for over a minute, an alarm goes off. Air quality is very important. The entire staff is also ICU-certified, meaning if a patient needs Intensive Care, they do not move the patient. That is the reason we can’t have cell phones on the floor – interferes with equipment.
I think what we are expecting at this point is for Peter’s counts to “bottom out” sometime next week. This is something we are used to, although maybe not the degree we’ll see this time? And then the next step – after his cells are put back in (the transplant) – we just don’t know. That’s when the going get’s tough. The side effects that can occur are infections, mucusitis (sores in the mouth which can travel down the GI Track; this is a very common effect with neuroblastoma kids); liver problems, lung or kidney problems. The doctor was just in and said almost 100% of the kids get severe mucusitis, and we will hope that he won’t need a breathing tube. He also told us that he probably won’t be that interested in eating as his mouth and throat will be very sore. So we are trying to fatten him up while he feels good and the Dr. said they will provide plenty of pain medication to make Peter comfortable. With all that said we can’t help but be positive, since Peter has been so great!

Finally, here is the phone number to Peter’s room 612 273-0027

Thanks for everything, we are so appreciative of all your prayers and support,

Erika and Ty

All is well at home. The kids all have colds, but I don’t think I know anyone who has not had a cold, the flu, strep throat, or some combination of, this winter! Peter’s counts should still be on the rise and a nurse will come out tomorrow and do labs to confirm.
Bone Marrow Transplant (BMT) is quickly approaching. We’ll head to the hospital at 8:00am on Monday, Feb 19th to start Peter’s “Work-Up Week”, where he’ll undergo all of the original tests & scans, bone marrow biopsy, and some additional doctor appointments. I think Ty & I are in for a major debriefing too, which I look forward to, since I’m the one who needs to know all the details. They will make sure that he has no infections or anything that will delay this process.
He’ll be admitted the week of the 26th and begin the high dose chemo (to completely wipe out his system) which lasts 4 days, followed by 3 days rest and then the actual transplant/stem cell rescue. As far as I know the transplant itself is a pretty short procedure – 4 hours maybe? It’s the recovery period that is tough. We expect Peter will be hospitalized for about a month starting 26th. Once out of the hospital he’ll need to remain close to the hospital for awhile.
They encourage the kids to decorate their rooms and make them their own since the hospitalization is lengthy and transplant can be a rough road. We all know Peter loves nothing more to be surrounded by friends and family. While we believe visitors will be welcome, they limit the numbers to maintain the air quality, so we asked Peter if he would like to have some pictures for his walls, to which he yelled “Yes, Yes, Yes!” If you can, we’d love for you to send him a picture – a picture of you, a picture you draw, a picture of you playing a sport or your pet or whatever you want!!
Please send them to “Uncle Matt”:
Matt Hanson
6520 Leesborough Ave
Eden Prairie, MN 55346
Speaking of Uncle Matt, I was just reminded again of how wonderful it is that he is doing this website. Since I’ve been typing away and Ty’s downstairs with Peter & Ellie, Kate just made her way up on to the kitchen table and spilled a glass of milk all over the floor… gotta go.

Unfortunately this doesn’t just refer to the fact that we’re staying in the house because it’s so frigid out there, but also refers to Peter. He is definitely hitting bottom – he woke up from a long nap yesterday complaining of sores in his mouth and was running a temp last night, which was just below the threshhold for having to go the hopsital and be admitted. He is tired, without much energy and is pale. He is scheduled to have platelet and blood transfusions tomorrow. Those should give him some of his color back, as well as energy. Today we are hoping he can fend off more fevers so we can go down only for the transfusions, and not for days of hospitalization!
Despite these occurrences, which aren’t unexpected, things have been great at home. He is happy to be here with his sisters, although I’m sure he’d like to get out and about more. Other than a few rides in the car, I don’t know that he’s left the house for over a week. We hope to remain here (other than the transfusions) this week and next before the long stretch – Bone Marrow Transplant. His “work-up” week, consisting of 6 hours a day of doctor appointments, scans/tests, and meetings, is to begin on February 19th.
Thank you for continuing to follow Peter’s journey, your prayers, thoughts, wearing of wristbands, etc!
It’s Super Bowl Sunday… enjoy!

Ty and I just wanted to put up a quick post to let each and every one of you know how grateful we are for your support for Peter and our family. We feel we have a lot to be thankful for, and are so proud of how Peter is handling the situation. We can’t thank you enough for what you mean to our family and we wish you and your families nothing but a fantastic 2007!!!

I came into this weekend with fingers crossed because Peter’s counts would be “bottoming out” and if he would be getting mouth sores and/or a fever, it would likely happen now. As a person who still has a fair amount of work to do before Christmas, I am OK with avoiding a 4-5 day trip to the hospital!! I’m happy to report that so far, no sores and no fever. We went to church last night to avoid the crowd and so he would be able to sleep as late as necessary today. (He wore his mask as usual and does not complain despite lots of little staring eyes!) Other than that he’s been in the house but in good spirits, playing (and fighting) with his sisters.
We will find out his counts tomorrow as Home Care will come out in the morning. He is scheduled for blood and platelet transfusions on Tuesday so we will go down and back. Those counts (hemoglobin and platelets) were pretty low on Thursday but they felt he would be fine to wait until Tuesday based on his past counts. So we are happy that we should be able to remain home now through Christmas. As Matt posted, we’ll be down the 27th and 28th for his “Re-Staging”, or testing, to see where things are at, and we believe the surgery is the next week. One minor correction on the schedule is the 6th Round is a “normal” round of chemo, and the “Knock-Out Round” is actually a 7th round. It’s done right before the transplant and is actually done on the Bone Marrow Transplant floor (how’s a guy supposed to keep all this straight?!) I don’t know the details of it yet other than it’s very high dose and wipes out his system entirely (it consists of different chemo drugs than what he’s getting now).
Happy Holidays!

We headed into the clinic about 8:30 this morning. I wasn’t confident that Peter’s counts would be high enough today, but I guess I was hopeful. After a bit of waiting I got the call that his ANC had not increased at all since Monday. In all honesty I was upset about the news. At first I thought it was just me being selfish – we just “wasted” 3 days, I didn’t want to go home, unpack, do laundry, bring the girls back home and get settled, only to turn back around in a few days and leave them again. But after a few minutes I realized that those weren’t the biggest reasons I was upset… I was really just sad for our son, who is the one who has to go through this for 1 more week than he already is. Don’t get me wrong, Peter didn’t complain one bit. It was just another “blood draw” and a couple more trips in the car for him. I guess it’s just one of those days where the reality of the situation isn’t sitting well with me.
Peter had a Hearing Test this afternoon before we left the cities. They had done a baseline test prior to him starting chemo in August. Since hearing loss can be a side effect they were re-testing to see where he was at. The good news is the inner ear is functioning fine and he doesn’t have any loss at this point in the “Normal/Speech Hearing Range”. But they did find his High Frequency Hearing to be about 20 decibals worse than normal for his age. This is not noticeable to him or us now, but High Frequency loss is typically an immediate side effect, and it can move into Normal Frequency hearing loss.
One perhaps more significant (and positive!) test result was the Kidney Function results looked normal. We are definitely thankful for that.
We are back home and it does feel good to be here. We are hoping Peter can start Round 5 on Monday and we are quite certain that the re-testing and surgery will now be postponed until after the holidays.
You may be wondering if I’m trying to become as good a writer as my brother Matt, and I wouldn’t even try! He’s been down with the flu so I thought I’d let him get some much-needed rest.

Let me start by reiterating exactly what Matt said in his post last night. THANK YOU, THANK YOU and THANK YOU some more! We wish we could have attended both events (Peter would love to have skated around in Irish territory.) We were so happy, however, that Peter and our girls were able to get out and have lots of fun with so many friends from the community. They had a wonderful time playing, running around with friends, shooting hockey pucks and eating great food (umm, I don’t think any of them tried the crickets!)
After Sunday’s event, Grandma and Grandpa Hanson took the girls to their home in Crosslake, and Grandma Mary, Ty, Peter and I (and Peter’s cousin Macy!) headed for the cities, anticipating an early start Monday morning. We had to be at the Masonic Cancer Center (clinic right next to the hospital) at 7:30am for labs to assure Peter was ready to start Round 5 of his chemo. We actually went up to 5B thinking they were OK, only to find out his ANC (absolute neutrophil count) was too low… bummer! We were there most of the day anyway because they were testing Peter’s kidney function. The chemo drugs can cause damage to the kidneys so they are monitoring to see if they need to revise the doses at all (no results back on this yet). Ty headed back to Brainerd for hockey and Peter and I decided it was easier to stay here until we go back early Wednesday morning to try again. I believe this is just the reality of getting further into his treatment. Peter had almost 3 full weeks to recover this time and the counts were still not quite there, so the cumulative effect is starting to show a little. Either way, it’s probably for the best because he does have a cold, and I’d rather he be at his best when he starts each round. In addition to starting his 5th round on Wednesday (knock on wood!) he will have another hearing test. This, too, can be a side effect and they did a baseline test before he started his treatments, so we’ll find out if he’s experiencing any hearing loss thus far. I’m pretty sure he’s suffering from some hearing loss – the kind where he can’t hear most things his mother says. Anyway…

I figured I’d give Uncle Matt a short break while they’re in NY on business (I guess a guy could have a break to do some things for his “real” job for a few days!!!) We are unbelievably happy to report that Peter handled Round 3 with as much ease as he did the first 2. And they had warned us that the chemo drugs this round can have some pretty severe side effects. We never know what the future will hold, so we’ll only focus here on the immediate, and Peter has had virtually none so far. As the doctors have said, “you’d think we’ve been giving him water all week!!” Believe me when I say we are counting our blessings.
The final information we received on the CT scans (neck, chest, abdomen/pelvis) was positive. The infected lymphnode behind Peter’s ear looks clear, the ones in his chest/shoulder area still show disease but are smaller, and the primary tumor in his abdomen is “significantly reduced”. That is all fantastic news, especially combined with the marrow looking clear!
Thought I’d clarify on the upcoming treatment as we’ve had many questions about that after the test results this week. Despite things clearly moving in the right direction, Peter’s treatment will remain the same: 3 more rounds of chemo, another surgery as planned, as well as the bone marrow transplant and likely some radiation & other things following that.
With a little luck, we’ll be home for 2 weeks before we head back for Round 3. Peter plans on being “the Hulk” (for the 2nd year in a row) for Halloween so he’ll definitely be sporting his costume when we go back to the hospital!
Baby Kate is pulling at my leg and needs a new diaper, so I’ll end it here!
Thanks to each of you for all you have done for our family.

This stuff is starting to confuse me a bit, so i’m sure it’s even more so to those of you reading! I thought i’d share a little about the Harvest procedure and where we’re at. As Matt said, the first day is complete. The harvest itself entails Peter being hooked up (through his temporary line) to a large machine for about 5 hours at a time. The machine draws blood directly out of the jugular vein at a high speed, it goes into the machine to be seperated (the machine keeps what will be sent to LA for purging and freezing until transplant time), and the rest goes right back into his body through the other line. It’s not painful for him but probably looks a lot worse as he has about 10 cords hanging around him, many which are filled with blood.
Peter’s blood culture from Tuesday night came back negative last night so that was good news! Unfortunately, about an hour later he spiked a fever again so they had to do another culture which is not back yet. If there is another bacterial infection of some kind, today’s work might have been done for nothing! But there is a very short window of time in which they need to collect (harvest), so they wanted to try and get it completed. So we are hopeful the fever was unrelated. They do not know the quantity of the stem cells collected today- they have been sent to the lab, but we don’t think we’ll know the results until tomorrow morning. So the plan is to collect again tomorrow, unless they can see by today’s collection that there is no way they’ll get enough in 2-3 days through this procedure. Then we would go to Plan B (take marrow through the hips). Assuming everything looks good in the morning, they’ll collect tomorrow and potentially some on Friday as well, but hopefully just tomorrow. It IS, as Matt posted, sort-of boring!! And tomorrow we won’t even be able to cheer for the Twins!!! All-in-all, things are good. Peter’s been a little out of sorts the last few days, but I think I would be too. The bone pain should subside within the next day, and once the collection is complete they’ll get the temporary port removed from his neck. I’m sure we’ll get no argument there.
Thanks again to all of you for keeping in touch.